Introduction

'Get Off Your Knees: The John Robinson Story' explores the experiences and life of John Robinson and his family, teachers and friends, as they move through the narrative about John’s life as a person with a disability.

'Get Off Your Knees' looks at one family’s approach to coping with the birth of a child with a disability and the experience of each member, including the individual, John, along with his teachers, employers and community members. It focuses on how this journey, filled with joy, challenges, pain and heartache is, at the same time, a story of empowerment, success, and possibilities.

We hope that John’s story will increase your knowledge about individuals with disabilities, inspire and empower you on your life journey.

Meet John Robinson

"My name is John Robinson. I am the subject of Get Off Your Knees, both a public television documentary as well as a published autobiography. I would like to share some of my experiences with you, but first I need to explain my disability.

I am a multiple-congenital amputee. I was born without the full development of my arms and my legs. My arm development stopped at my elbows and my legs are without knees and the upper leg. My lower leg connects to my hip directly. I am three feet, nine inches tall and walk with a rocking/shuffling motion.

There are approximately 1.7 million people with limb loss in the United States – excluding fingers and toes. But there are relatively few people born with congenital limb loss. In 1996, it was recorded as 25.64 per 100,000 live births. I always knew intuitively it was a small number, but imagine my surprise at just how small of a number. And the amount of congenital limb loss babies with defects to all four of their limbs is even smaller.

I am a person with a disability, but not an expert on disability. I only hope my experiences I share can shine a light on the different abilities we all have that can make us a success in life."

A Few Words From Dan Swinton (Director)

"I met John Robinson two-and-a-half years ago at my job interview here at WMHT. I walked into the building and was waiting for Jim Felitte the production manager to come to the front desk to meet me. John walked around the corner of the desk and I saw him out of the corner of my eye. He was looking at me. I didn’t know who he was or that he was going to help conduct the interview so I said hello and quickly looked away. I think I started watching the TV in the lobby. After about a minute Jim came up and ushered me into a conference room and John led the way. He pulled himself up into a chair and Jim introduced us. We did the interview and said our good-byes; I shook hands with Jim and then looked at John. Usually at the end of an interview you shake hands. What do you do when the guy that you want to shake hands with doesn’t have hands? I will admit that I kind of felt like I was being tested. Not knowing John, and not knowing what to do, and only having about a millisecond to decide, I did one of these sheepish waves. I flunked.

Now my wife will tell you that I have these sort of 'Woody Allen' moments where I just rip myself apart of the minutia of some event that happens throughout the course of the day. And I just let loose that evening. ‘Ohhh… what an idiot I am...I didn’t know what to do...I should have just reached out my hand, but I don’t know if he would have reached back, and would he have been uncomfortable, and how awkward would I have looked, and well he didn’t extend his arm so maybe he really didn’t want me to, but now he feels slighted, and now I’m probably not going to get the job...' It’s the end of the world!

The thing is - I don’t think John cared at all! I was agonizing about what I did or did not do but it was obvious that John had overcome so many obstacles to get to the place he was at, that my extending or not extending my hand was the last thing on his mind.

Unfortunately, I think that many people are so unsure of what to do around people with disabilities that they end up committing one of the worst sins we possibly can, which is to do nothing: to just ignore them. To ignore someone’s challenges is to ignore an integral part of that person. Fortunately, for me and for others, John cannot be ignored and that begins the explanation as to why I wanted to make this documentary.

When I sat down with his wife Andrea for her interview, the first words out of her mouth were, 'I don’t know why anyone would want to do a story about John. He’s just not that interesting.' I’m thinking, 'You’re kidding right?'

John’s incredible!

Is John incredible because he is a great salesman with a disability? Is it because he is a great dad, or husband, or a member of the community who happens to have a disability? No! Don’t get me wrong - John is great. He’s a great salesman, dad, husband and community member. Period! The amazing thing about John is the way in which John’s physical challenges are in many ways an asterisk to his life. As much as his life has been impacted by his condition, it has not come to define him, and he makes it all look so easy. Andrea doesn’t see John for his challenges and neither does anyone else who knows him.

John doesn’t advocate for people with disabilities by marching in parades or by knocking down the doors of power but by getting up every day and making it happen, despite the difficulties. And I hope that it encourages us all to consider our own situations. I have had so many people say throughout the course of this project, 'If our situations were reversed, I don’t know if I could do what John does, but I’ll tell you when I start to feel sorry for myself and my own day- to-day challenges I think of the example that John sets.' That’s what makes him incredible. Because of the inspiration he is to others just by being the person that he is. It doesn’t mean he never has a bad day but it is his approach to life in general that makes such a powerful statement.

I don’t know if John would have agreed to make the film if he knew what I wanted to do before we started. I know I‘d think twice if someone wanted to show up at my house at 5:45 in the morning while I was in my pajamas to point a camera in my face and say, 'Okay, now get dressed!' I made John climb a mountain so that I could document his getting bloodied and beaten all the way to the top and then, I threatened him for months saying that the footage was no good and that he’d have to go do it again. But more so, I think the really scary thing about making a film like this, for any of us, would be to open up our souls and bear it all - which John does: the hurts, the hopes, the dreams, trials and successes. It takes a lot of courage to put yourself out there for the world to see, and worry about how some TV producer will tell your story, so I want to thank John letting me into his world.

The film itself is not intended to be just a great piece of voyeurism. Not just 'How does he put on his pants in the morning?' but why does John get dressed in the morning? Why do any of us get dressed in the morning? I think the answer to that question is at the heart of this film, and will hopefully inspire viewers to approach their own problems with the same spirit. That is what I think is the promise of public television: to elevate human interest to human engagement.

John did not get where he is alone and I was privileged to talk with some of his family and friends; they too were extremely honest and willing to share John’s story.

I hope that you will enjoy 'Get Off Your Knees: The John Robinson Story.'"

Using This Guide

This guide is designed to help you use 'Get Off Your Knees' as the centerpiece of a community event. It contains suggestions for convening an event, as well as ideas for how to help participants think more deeply about the issues in the film. The questions are designed for a general audience as well as youth, parents and employers.

Facilitator Toolbox

Controversial or unusual topics often make for excellent discussion. Those same topics, by their nature, usually give rise to strong emotions and beliefs. As a facilitator it is your role to create an atmosphere where people feel safe, supported, and respected, making it more likely that they will be willing to share openly and honestly.

Planning an Event

In addition to showcasing 'Get Off Your Knees,' this film can be used to engage participants in discussion and self-exploration about the issues of disability, empowerment and personal action. An event can also provide opportunities for individuals from different groups or perspectives to exchange views.

Prepare yourself as a facilitator: Be knowledgeable.

• Read this guide thoroughly. Jot down your reactions to John’s and Dan Swinton’s introductions. • Watch the entire film and view all video clips. • Think ahead about 'hot topic' issues that might arise. • Know your audience. • Review and familiarize yourself with the provided resources. • Seek technical assistance if you are not familiar with the subject. There are individuals and resources in your local community that you can reach out to be part of the planning process and discussion. • Gather the equipment will you need. • USB Drive/laptop with downloaded clips (computer with internet access if streaming) or DVD of 'Get Off Your Knees' with DVD player • Projector, speakers, screen • Copies of pre- and post- survey • Newsprint, chalk board or white board, markers and pencils to use to tally Disability Self-Awareness Survey responses • Choose a space that is accessible for individuals who are physically or sensory disabled. • Be sure to plan ahead and offer your audience an opportunity to request reasonable accommodations. Two weeks prior notification for reasonable accommodations is standard practice. • Room arrangement should reflect both the size of your audience and level of intimacy that is appropriate. For example: Theater style is less intimate than a circle of chairs. • Schedule enough time (minimum one hour).

Preparing the Group for the DVD and Discussion

• Plan an ice breaker exercise or simple introductions that people can opt into or out of.• Remind participants that everyone sees through the lens of their own experience. • Agree on ground rules for the discussion and around language usage. • Ensure that everyone has an opportunity to be heard. • Talk about the difference between dialog and debate. • Encourage active listening.

The Disabilities Self-Awareness Survey included in this guide can be used to gain an understanding of your participants, their background knowledge, and level of familiarity with the topic of disabilities. Use the survey to assist participants’ exploration of their assumptions about persons with disabilities. The survey may also be used as a pre-and post-viewing tool to assess group transformation. Be sure to protect the privacy of individuals when tallying responses.

Suggested Post-Survey Facts and Questions to Share With Audience Before Viewing

1. How many people and families are affected by disability? • Facilitator notes: Demographics – 54 million; one out of five people in the U.S.

2. Who are people with disabilities? • Facilitator notes: Family members, friends, co-workers, neighbors, students, self, relatives, spouse, child...etc. They are 'us.'

3. How much do we know about people with disabilities and how do we know the information? How and when are our opinions or perceptions formed? • Facilitator notes: People with disabilities haven’t always been integrated into society. Examples include: separate schools and classrooms, many community events and buildings that are not accessible. In addition, the impact of media helps form opinions and perceptions. How are persons with disabilities portrayed in television and films? People with disabilities are often portrayed as villains, victims or heroes -not 'everyday' people. We may know about medical labels but not always about the individual behind the label. We see the disability before we see the person. We are taught that it is not polite to ask.

4. How do our perceptions impact our decision-making? • Facilitator note: Particularly useful with business and employers who are making hiring decisions.

5. Why do we respond the way we do? • Facilitator note: Limited experience, lack of knowledge, fear of the unknown, fear that it might happen to you, past experience – either positive or negative.

6. What is your experience? Share a personal experience that you have had with a person or group of people who have disabilities. What was it ? How did you feel or respond? And how has that shaped your views? • Facilitator Notes: • Basic facts: • There are an estimated 54 million people with disabilities living in the United States. (U.S. Census Bureau) • There are nearly 7 million school-aged children with disabilities in the U.S. (Congressional Research Service) • Nearly 70 percent of working-age adults with disabilities are unemployed. (U.S. Census Bureau, Population Division and Housing and Household Economic Statistics Division) • Almost 40 percent of working-age Americans with disabilities live in poverty. (World Institute on Disability)Fewer than 25 percent of people with disabilities who could be helped by assistive technology are using it. (Alliance for Technology Access) Be clear about your role.

Post-Viewing Themes to Explore

Exclusion vs. Inclusion

People with disabilities are one of the most disadvantaged groups in society. Although laws have been passed by Congress and states to provide remedies for past exclusions…laws do not change attitudes. There is a need for sustained communication to challenge negative attitudes and ignorance towards people with disabilities and to ensure that all in society understand why these rights are necessary and what they mean, economically and socially. How does inclusion change attitudes?

Perceptions and Expectations

John does not allow others’ perceptions and expectations to determine what he can and cannot accomplish. His acceptance of his disability ultimately determines his life. How do others’ perceptions effect the expectations we have of ourselves?

Self-Confidence: 'Can Do' vs. 'Can’t Do'

John’s 'can do' attitude is essential to his life story. To quote John, 'Is it an obstacle or an opportunity when I meet someone?' Opportunities are disguised as challenges. How does viewing challenges as opportunities build self-confidence?

Perseverance and Personal Responsibility

John talks about his perspective of making sure he does not accept rejection as a personal affront; he focuses instead on the need to continually improve his job skills. How does taking personal responsibility impact our decision-making?

Moving from Dependence to Independence

Intuitively John has been a problem solver all his life. This striving for independence has enabled John to move forward and climb 'any mountain.' What is the relationship between problem-solving and becoming independent?

Closing Comments

Facilitator may choose to read the statements below to the group as part of the closing to the discussion.

Attitude is the number one barrier for people with disabilities. Why is that the case? Surveys of business and the general public have been conducted to identify why people with disabilities face so many barriers in the workplace and our community. It wasn't cost, lack of skill, lack of ability or desire to work or to be involved in the community. It was the attitudes that others held about what a person could or couldn't do. These attitudes were based on the lack of knowledge or experience, assumptions, fears and stereotypes held by individuals and society in general.

Disability is not discussed and our society has been taught not to ask. Generally, the belief is that it is not polite to ask a person with a disability about their condition or what they need. People with disabilities have also been segregated in schools and other organizations or activities. How do we learn more about this population if there is no opportunity to connect?

Where do we get our information about disability - from limited experience, media portrayal and assumptions about medical labels that are assigned to certain groups of people who have a similar disabling condition. The truth is that each individual is unique and the impact of the disabling condition affects each person differently depending upon a number of factors such as severity, time of onset and other person specific situations. The bottom line is that disability is part of who a person is but not who they are in their entirety. The best course of action is to recognize the individual not the disability, use 'person first' language (e.g. a person who is blind) and ask the person if you have questions: they are the best resource.

As a society we need to talk about disability. Education is the only way to overcome attitudinal barriers! Thanks to WMHT Educational Telecommunications for the opportunity.

Suggested Ongoing Activities: Continuing to Go Places You Have Not Gone Before

What next steps and changes are you going to make? For example...

• Learn more by participating in diversity training workshops. • Explore resources here or on here. • Start your own 'Hodge Podge Scrapbook' and collect articles, bookmark websites and other resources to keep yourself empowered and focused on ‘person first language.’ • Examine the environment around you for physical and attitudinal barriers. For example: Is your workplace or school fully accessible? What values or attitudes exist in your environment related to individuals with disabilities? • Get involved and educate others in your peer group about what you learned from this viewing and recommend 'Get Off Your Knees: The John Robinson Story.'

• Disability.gov. This website is sponsored by the federal government. It lists a variety of resources and information, including the history of the disability community.

• Museum of Disability. An interactive, online site that connects users with a variety of disability events and history.

'Get Off Your Knees: The John Robinson Story' was produced by WMHT Educational Telecommunications. WMHT Educational Telecommunications uses the power of non-commercial public television, radio, the web and other media to enrich the lives of more than a half-million households throughout Eastern New York State and portions of Western Vermont, Massachusetts and Connecticut. Television broadcast channels include WMHT-TV, WMHT-Create and WMHT-World. Radio stations operated by WMHT include WMHT-FM 89.1 (Classical) and WEXT 97.7 (AAA). WMHT also operates RISE, a radio reading service for the visually and print disabled. In addition, WMHT offers numerous community outreach initiatives that inspire, educate and entertain for a lifetime.